Updates

April 16, 2021April 16, 2021
Phase 3 Trial of B-VEC, Topical Gene Therapy for DEB, Fully Enrolled

Krystal Biotech announced the full enrollment of a pivotal Phase 3 clinical trial of its topical gene therapy B-VEC (beremagene geperpavec) as a skin wound treatment for ... Read more
April 15, 2021April 15, 2021
EveryLife Scholarship Fund Open Until May 7 for Adults With Rare Diseases in US

The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through ... Read more
April 13, 2021April 9, 2021
Our Global EB Community Continues to Inspire Me

This month, I was once again impressed by how well connected the epidermolysis bullosa (EB) community is. I remember when I was younger, no such ... Read more
April 9, 2021April 9, 2021
Amryt Pharma Advances Regulatory Applications for Filsuvez

Amryt Pharma has completed its rolling submission of an application to the U.S. Food and Drug Administration seeking the approval of Filsuvez (Oleogel-S10), a topical gel to heal ... Read more
April 8, 2021April 6, 2021
After Much Trial and Error, Here’s Our Best Bandaging Techniques

Like with everything involving epidermolysis bullosa, finding the best bandage routine for our son Jonah, who was born with EB in 2009, has been a ... Read more

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January 23, 2018January 23, 2018

Factors Beyond COL7A1 Mutations May Contribute to Dystrophic EB Forms, Study Suggests

A study from Spain has raised the possibility that the development of dystrophic epidermolysis bullosa (DEB) could be attributable to additional factors besides mutations in the COL7A1 gene. Researchers reached this conclusion after studying three unrelated patients with different forms of DEB ... Read more

Updates

Phase 3 Trial of B-VEC, Topical Gene Therapy for DEB, Fully Enrolled

EveryLife Scholarship Fund Open Until May 7 for Adults With Rare Diseases in US

Our Global EB Community Continues to Inspire Me

Amryt Pharma Advances Regulatory Applications for Filsuvez

After Much Trial and Error, Here’s Our Best Bandaging Techniques

Subscribe to our mailing list

Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

Stem Cells Derived From Skin Show Early Potential to Treat RDEB

Patient-derived Skin Graft Found to Treat RDEB in Boy, 13

Reframing Broken Dreams About Family and Future

4th Annual ‘Plunge for Elodie’ Goes Virtual to Raise Funds for EB Research

Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day

A Letter to My Amazing Son Jonah on His 12th Birthday

Certain Coping Strategies May Help Boost Life Quality for Young Patients, Parents

What ‘Rare’ Means to Me This Rare Disease Day

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Umbilical Cord Stem Cells Eased RDEB Symptoms

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

How We Began Educating Our Community About EB

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Fighting for Insurance to Cover My Son’s Lifesaving Bandages

Staph Infections Prevalent in EB Skin Wounds

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

By Focusing on What I Can Control, I’m Finding the Good in 2020

Phase 3 Trial of EB-101 Cell Therapy Seeks to Complete Enrollment This Year

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

NORD’s Caregiver Respite Program Continues Through Pandemic

Trudging Through Difficult Days With Corneal Abrasions

INM-755 Cream Fares Well in Volunteers With Open Wounds

4 New COL7A1 Mutations in Self-Improving DEB Identified in Case Report

Factors Beyond COL7A1 Mutations May Contribute to Dystrophic EB Forms, Study Suggests